Calling all the poor converters here! :) - Thyroid UK

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Calling all the poor converters here! :)

AnnaSo profile image
20 Replies

Hi everyone!

I am a poor converter with high RT3. I have been on 150mg of Levo for 10 years and it’s always the same story T4 top of the rage, RT3 top of the range, T3 bottom. None of the doctors/ Endos I’ve ever been to addressed it. I have T3 and added 10mg few weeks ago after seeing another blood test like described above but not much difference. I perhaps have to go all the way to T3 only.

All nutrients are optimal but zinc ,which is low.

Symptoms: fatigue, hair loss, weigh gain, intolerance to cold.

What has been your experience? What treatment are you on? What worked, not worked? :)

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AnnaSo profile image
AnnaSo
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SeasideSusie profile image
SeasideSusieRemembering

Anna

Have you got any new thyroid test results since you've improved your nutrient levels? It would be an idea to see what they're like now before adjusting doses.

After optimising my nutrient levels and tweaking doses of Levo and T3, which has been a very long journey, I think I have now found the doses that suit me.

AnnaSo profile image
AnnaSo in reply toSeasideSusie

Hi Sussie!

Disappointingly nothing changed on the thyroid front :((( still the same old, same old:

T4 16 (10-20)

T3 2.7 (2.5-6.5)

TSH 0.12 (0.4-3.8)

These results were on 150 Levo only. Since then I added the 5 then another 5 of T3 without cutting down on Levo. Previously tried 100T4/25T3 combo but that went badly (massive weigh gain and fatigue) but was not optimal in nutrients at the time.

SeasideSusie profile image
SeasideSusieRemembering in reply toAnnaSo

Anna

Maybe wait until 6 weeks after the last dose change and see where levels then lie. If FT3 is still low the increase the T3 to 15mcg.

Adrenals OK? That was part of my problem.

Saya85 profile image
Saya85 in reply toSeasideSusie

Hi AnnaSo

Just a thought- wouldn’t your tsh rise if your t3 is so low?

If these results were taken before t3 supplementation then I’m confised why you have low t3 and low tsh. Does that not point more to central hypo?

T4 is obv high because you’re supplementing

SeasideSusie profile image
SeasideSusieRemembering in reply toSaya85

Saya

A diagnosis of central hypothyroidism would be made when TSH is low/normal/slightly raised and FT4 low.

AnnaSo hasn't given results from initial diagnosis but in her profile she says she was diagnosed underactive/Hashi's 12 years ago.

Kell-E profile image
Kell-E in reply toSaya85

Once you begin supplementing with levo the once a day peak suppresses TSH for some people. My fT3 was near the bottom of the range, my fT4 near the top, but TSH was .04 . Also, TSH is influenced by both fT4 and fT3.

AnnaSo profile image
AnnaSo in reply toSeasideSusie

Hi Sussie!

I suppose you’re right, perhaps still early days for both T3 and since the nutrients went back to normal. I’m just eager to see improvements now that I am doing things for myself 🙂

My adrenals are just slightly off with high mid-day cortisol and bottom of the range DHEA. I’m glad I’ve captured it so early on and, to be honest, I’m surprised it wasn’t worse given how badly I treated my body over the years with eating disorders and co. I was told this can still be managed with lifestyle changes and looking after myself which I am now taking very seriously. I am currently on a retreat in Bali and thinking of giving up my stressful and high demand corpo job in few months and doing sth else that is kind on my body and mind. Boyfriend Is very supportive of these choices and even suggested we move to Bali for couple of months for me to revive.

in reply toAnnaSo

Your BF sounds very supportive, Does he have an older brother? LOL 🐱

AnnaSo profile image
AnnaSo in reply to

Unfortunately not, Irina! 😂

greygoose profile image
greygoose in reply toAnnaSo

Your FT4 isn't high. It's only just over mid-range. In fact, it's rather low for someone on 150 levo. Do you have an absorption problem?

AnnaSo profile image
AnnaSo in reply togreygoose

Hi greygoose! The most recent results are slightly lower than usual (past 10 years), both for FT4 and FT3. Whilst on 150 Levo my FT4 is always around 18-20 (10-20) mark and T3 at 3 (2.5-6.5) mark with RT3 top of the range every time I test it.

I don’t think I have an absorption problem as absorbing nutrients from food and supplements ok. I personally think poor conversion and high RT3 are my issue given my constant dieting that had been going on for years as well as high demand job and stress at home. All that has been addressed recently though and I now eat a Paleo diet with 3 meals a day and on retreat at the moment. Boyfriend was told not to get on my nerves and I am planning to quit my demanding corpo job ☺️

greygoose profile image
greygoose in reply toAnnaSo

Well, I could only judge by the most recent results that you posted. And the FT4 there, is not high.

rT3 will obviously be high if you have high FT4. Whether or not that is a problem, no-one really knows. But it is the result of poor conversion, not the cause. Lowering your dose of T4 and adding some T3 should get rid of it. :)

AnnaSo profile image
AnnaSo in reply togreygoose

I’ll see how I get also how with the current combo as it’s only been like 3 weeks of 150/10. I think I am starting to feel better but it could be cos I’m holidaying 😃

SlowDragon profile image
SlowDragonAdministrator

Are you improving zinc. It's essential for good thyroid function

Also linked to hair loss

hypothyroidmom.com/my-favor...

ncbi.nlm.nih.gov/pmc/articl...

AnnaSo profile image
AnnaSo in reply toSlowDragon

Yes, I am supplementing 15mgr twice a day now ☺️

Kell-E profile image
Kell-E

rT3 has been shown to be a potent inhibitor to conversion. Someone mentioned that it is the result of poor conversion, not the cause. Actually, it is both. The link below is from one of the qualified medical advisors to this board, Dr. Kent Holtorf.

holtorfmed.com/reverse-t3-a...

Studies have demonstrated that rT3 is an extremely potent inhibitor of T4 to T3 conversion. When compared to Propylthiouracil (PTU), a crystalline compound used to treat hyperthyroidism, rT3 demonstrated to be 100 times more potent in reducing conversion.

AnnaSo profile image
AnnaSo in reply toKell-E

I think the below paragraph from this article is spot on:

“It is normal to have a certain level of rT3 in the bloodstream, but too much will block T3 receptors severely impairing the synthesis of active T3 and sabotaging metabolic functioning on a cellular level. This issue is exacerbated when the body undergoes stress. Stress causes the body to produce higher levels of cortisol as a way of conserving energy. This will further inhibit T4 to T3 conversion resulting in a higher T4 to rT3 conversion causing a competition between rT3 and T3 at the receptor sites. Inactive rT3 will dock itself to the receptor sites blocking them and preventing active T3 from getting in, sabotaging normal metabolic functioning.”

I sort of wanted to get some suggestions and stories of others with such issue as I am not sure how to overcome other than switch to T3 only which I am scared of a little to be honest....

Kell-E profile image
Kell-E in reply toAnnaSo

Yes, rT3 evidently interferes with the action of T3, though there is some debate as to whether it actually blocks the receptors. It really doesn't matter, rT3 is very powerful at slowing metabolism.

I had my thyroid removed in 2011 and was on levo of varying dosages. My endo added a little T3, but it made almost no difference. I am now on 1.5 grains of NDT and 50 mcg of T3. On levo my fT4 was near the top, fT3 near the bottom and rT3 (which I only had tested twice) was 19. I feel so much better now. I have lost a few pounds, which before was totally impossible.

I read through your profile. It sounds like you have a level of adrenal fatigue from the stress of diet/thyroid problems. That would be the only caution. You read about people with weak adrenals not tolerating T3 well. I suffered from low morning cortisol and high evening cortisol...I'm not sure which stage that is, but I had no trouble adding T3.

Adding just a little can actually make the overall situation worse. T3 is quite suppressive of TSH and that skews the conversion ratio to favor rT3 even more, not mention that it reduces your body's production of T4 and T3 (if you have any). So to actually feel better the reality for us poor converters is that we probably need quite a bit of T3. And much less if any at all T4.

AnnaSo profile image
AnnaSo in reply toKell-E

Sounds like we were on the same boat when you were on Levo only! Thanks for sharing your experience!!!

I actually have a very mild adrenal issue (high mid-day cortisol) all other readings are optimal. It was the first time I tested so I will have to retest as it was a stressful day at work too. They say that if only 1 is out of range this is usually just a bit of stress on the day not an ongoing issue with adrenals. My DHEA was also just bottom of the range but nothing drastic. So I’d say early days and hopefully if addressed now can be managed easily. I will also retest when I’m back from hols.

Aaaah it’s never easy is it! ☺️ I am worried to play with meds and doses by myself as I am recovering from a very bad place and I do t want to be there again... there are days when I think of why bother just cope with Levo and mediocre life I can have on it, other days I want to do things about it cos I want to feel ‘normal’ like we all.

Do you self medicate or are you under supervision? How did you go about rising T3 so high? ☺️

Kell-E profile image
Kell-E in reply toAnnaSo

I self-medicated until I found a doctor who was fine with what I was doing, lol.

Okay, thyroidectomy for suspected cancerous nodule in 2011. (it was benign, but thyroid was never right, so I was fine with it)

Endo started me on 112 mcg levo. Within 3 months I was freezing cold and exhausted. He added 10 mcg T3. I felt a little less freezing, but still exhausted. He refused to increase T3 telling my GP that people just want more to get a 'high'. GP said, 'That's ridiculous!', increased T3 to 20 mcg but said to find someone who knows what they are doing.

I went to a women's health clinic and they decreased my levo to 88 mcg, T3 stayed at 20 mcg. They did the saliva cortisol test. Then I switched GPs and would need a referral back to women's clinic so GP managed my thyroid meds. GP freaked out over taking T3, so sent me to endo. Endo continued T3, but I wasn't feeling great and having stomach problems, so I experimented with higher levo. (I had so many rx's I combined them to make 150 mcg) Turns out my bloating and tummy troubles were due to the DHEA that women's clinic recommended.

Eventually resumed 100 mcg levo and 10 mcg T3 under supervision of endo. Wasn't feeling great. Complained and mentioned the ratio of T4/T3 in NDT. She asked if I'd like to try it. YES! So after much back and forth she prescribed 2 grains. I actually felt better on it, but still falling asleep in the afternoon. I added 10 mcg T3 to it. Later I asked if that was okay. NOPE, not okay with her. So I bought some T3 from Mexico and increased it. I was dreading telling her.

In the meantime my GP moved away and I was passed off to someone who thinks NDT is directly from the Devil. It made me so angry that I scoured the internet for a GP who believed in NDT. I got an appointment and told him what I was doing. He wrote an Rx for what I requested. Like I said, I am finally able to lose a few pounds and staying awake all day. I see him again in Sept. So, you asked if I was self-medicating or under medical supervision. LOL The answer is YES, both!

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